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The Assistance Fund Opens New Program for Acid Sphingomyelinase Deficiency

FOR IMMEDIATE RELEASE

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Acid Sphingomyelinase Deficiency

ORLANDO, Fla., January 16, 2023 —The Assistance Fund, an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs, today announced the launch of a new financial assistance program for people living with acid sphingomyelinase deficiency (ASMD).

“People living with acid sphingomyelinase deficiency face a host of challenges including basic day-to-day activities,” said Joslyn Crowe, Executive Director of the National Niemann Pick Disease Foundation. “We are thrilled that The Assistance Fund’s new program will help so many families in our community access a treatment they need to improve their quality of life.”

People living with acid sphingomyelinase deficiency, also known as Niemann-Pick Types A and B, have an SMPD1 gene mutation and lack an important enzyme required to break down the body’s sphingomyelin. Their symptoms may start as jaundice, constipation, and nausea, but eventually lead to organ malfunction.[1] Laboratory and genetic testing is important for identifying whether a patient has Type A or B.

“Access to testing and treatment is essential for patients and families facing an acid sphingomyelinase deficiency diagnosis,” said Judith M. Fox, Interim President and CEO of The Assistance Fund. “Thanks to our generous donors, The Assistance Fund’s new Acid Sphingomyelinase Deficiency Financial Assistance Program will ease the worry of patients and allow them to get the care they need.”

To learn more or determine eligibility for financial support, visit tafcares.org or call (855) 233-0505 to speak with a Patient Advocate.

A list of all the disease programs available from The Assistance Fund can be found on the website tafcares.org.

About The Assistance Fund

The Assistance Fund (TAF) is an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses. The Assistance Fund currently manages 80 disease programs, each of which covers all FDA-approved medications that treat a specific disease named in the disease program. Since its founding in 2009, TAF has helped more than 160,000 children and adults access the treatment they need to stay healthy or manage a life-threatening, chronic, or rare disease. To learn more about The Assistance Fund, or for information on how to donate, please visit tafcares.org.

Media Contact

Margaret Figley

Senior Director of Communications

margaret.figley@tafcares.org

 

[1] National Niemann Pick Disease Foundation, “Niemann-Pick ASMD,” https://nnpdf.org/niemann-pick-asmd/, accessed January 2023.

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